(207) 861-3000 / (800) 491-8600

Lymphedema FAQ

What is lymphedema?
Lymphedema is condition which produces abnormal swelling in some area of the body.  It most commonly develops in an arm or a leg.  However, it can occur anywhere in the body including the face, neck, breast, abdomen, or torso. 

The lymphatic system helps the body fight infection.  It also transports lymphatic fluid through the lymph nodes and vessels.  When these structures are damaged or removed, the body’s ability to transport lymphatic fluid is impaired.  If the body is unable to compensate for the impairment, lymphatic fluid will begin to accumulate in the affected area of the body. 

What causes lymphedema?
Lymph fluid is filtered through the lymph nodes as it circulates through narrow vessels (similar to veins, arteries and capillaries) removing bacteria, toxins and dead cells.  When the lymph nodes or vessels become infected, are damaged, or removed, they lose their ability to transfer lymph fluid causing it to accumulate in the tissues.  Lymphedema symptoms may be present at birth or develop later during adolescence or midlife due to a failure of the lymphatic system.  Lymphedema can also develop as a result of trauma, localized swelling, infection, scarring or chronic venous insufficiency. Many cases develop secondary to other existing medical conditions or the methods used to treat them. 

Are their different kinds of lymphedema?
Yes.  Lymphedema is classified as either primary or secondary lymphedema. 

Primary lymphedema is a rare, inherited condition caused by problems with the development of lymph vessels in the body.  Primary lymphedema occurs most frequently in women and usually affects the legs, rather than the arms.

Secondary lymphedema refers to any condition or procedure that damages the lymph nodes or lymph vessels can cause lymphedema.  Causes may include:

Surgery can cause lymphedema to develop if the lymph nodes and lymph vessels are removed or severed. For example, surgery for breast cancer may include the removal of one or more lymph nodes in the armpit to look for evidence that cancer has spread. If the remaining lymph nodes and lymph vessels cannot compensate for those that have been removed, lymphedema may develop in the arm.
Radiation treatment, such as those used to treat cancer, can cause scarring and inflammation of the lymph nodes or lymph vessels, restricting flow of the lymph.
Cancer cells can cause lymphedema if they block lymphatic vessels. For example, a tumor growing near a lymph node or lymph vessel could become large enough to obstruct the flow of the lymph fluid.
Infection can infiltrate the lymph vessels and lymph nodes, restricting the flow of lymph fluid and causing lymphedema. Parasites can also block lymph vessels. Infection-related lymphedema is most common in tropical and subtropical regions of the globe and is more likely to occur in undeveloped countries.
Injury that damages the lymph nodes or lymph vessels can also cause lymphedema

Who is at risk for developing lymphedema?
Individuals with a family history of lymphedema may be at increased risk for developing primary lymphedema.  In the US, chemotherapy, radiation, and surgeries that include lymph node removal have all been strongly linked to the onset of lymphedema.  An individual who has received even one of these interventions as part of their cancer care is considered to be “At Risk”.  Lymphedema may also develop secondary to trauma, infection, or other medical conditions.

What are some general signs and symptoms of lymphedema?
  • Gradual onset of swelling in an area of the body that worsens over time
  • Difficulty fitting an arm or leg into clothing
  • Heavy, full, or aching sensation and/or limited movement in the affected area
  • Repeated infections in the affected area
  • Changes in the texture of the skin in the affected area
  • A “thick” or “dense” feeling under the skin in the affected area that is different from the unaffected side

Can lymphedema be prevented?
Unfortunately, there are no specific steps that can be taken to definitively prevent the onset of lymphedema.  Healthy lifestyle habits are beneficial in many respects, but even with meticulous habits and risk reducing behaviors, a person at risk for developing lymphedema may still develop symptoms at some point.

Are there successful treatments for lymphedema?
Yes.  Complete Decongestive Therapy (CDT) is considered the “Gold Standard” for the treatment and long term management of lymphedema.  CDT is a highly effective, non-invasive form of treatment that emphasizes education and the individual’s ability to manage their symptoms.  Components of CDT include:

Manual Lymphatic Drainage (MLD):  A specialized hands-on therapy technique that follows lymphatic pathways to stimulate and open obstructed lymph structures.
Compression:  A multi-layered bandaging technique is typically employed first to produce a rapid reduction in the size of the affected area, improve the underlying tissue quality, and if needed, assist with re-shaping.  Once the affected area has reached a relative plateau with regard to size, tissue quality, and shape, compression garments are utilized to maintain the newly established baseline.  The CLT will make recommendations for custom or non-custom garments, and textile quality based of the individual’s response to treatment. 
Exercise and Nutritional Support:  When needed, a registered dietician can offer suggestions about healthy eating and weight loss habits.  A CLT can also recommend specific exercises to improve the body’s efficiency with fluid management. 
Hygiene and Topical Skin Products:  Products and personal care habits that can help prevent infection, treat bacterial or fungal growth, or improve thickened skin are discussed as a routine part of care. 
Education:  The primary goal of treatment is to teach individuals to be independent with ongoing, long-term management of their lymphedema symptoms. 

What makes the treatment most effective?
Understanding lymphedema, its causes and the steps necessary to properly manage the symptoms is a considerable component of effective treatment outcomes.  Consistent and diligent self-management, weight control, and adherence to treatment protocol recommendations are necessary to achieving good long term results. 

Will therapy work?
Each individual’s response to treatment is different.  However, there are some factors that may hinder good treatment outcomes.  These include, but are not limited to: poor weight control, an inactive lifestyle, and inconsistent adherence to treatment and self-care recommendations.

Will therapy cure lymphedema?
At this time, there is no cure for lymphedema.  However, it can be very successfully managed following timely diagnosis and appropriate treatment.  It is important to understand that lymphedema is a chronic condition that is not “cured” but “managed” over the course of a lifetime.  Seeking treatment early is an important part of managing lymphedema.  As important is the individual’s commitment to their own well-being, self-care and long term management. 

How do I begin receiving Lymphedema Services at Inland Hospital?
A referral/prescription from a licensed medical provider (MD, DO, NP, PA) is required prior to beginning the evaluation process.  Our staff will contact the referring physician for additional information, such as a complete medical history and any pertinent test results needed to determine if an individual meets guidelines for treatment.  In some cases, additional testing may be requested to rule out conditions that may worsen with treatment. 

Individuals are then scheduled for a 60-90 minute initial visit.  This includes a review of symptoms, a physical assessment, baseline measurements of the affected area and discussion of treatment options and recommendations.  Based on this assessment, an individualized treatment plan will be established and future treatment appointments scheduled. 

Will my insurance cover treatment?
Inland Hospital participates with most health insurance companies, health maintenance organizations (HMO) and Medicare.  Prospective patients should be aware that part of the cost of treatment may include compression bandages and/or compression garments in additional to the treatment sessions.  We encourage individuals to contact their individual insurance carrier(s) for benefit allowances.  

How will lymphedema affect my lifestyle?
Lymphedema is a condition that requires life-long management.  Individuals at risk for developing lymphedema should educate themselves about risk factors, matters of prevention, and symptoms.  Left unmanaged, lymphedema is a progressive condition that worsens over time.  This progression is often gradual and causes both cosmetic and physiological changes.  Untreated lymphedema can result in progressive hardening of the affected tissues and skin, increased fluid volume, changes in skin appearance and texture, and increased frequency of infections. 

While in the initial treatment phase, individuals may feel their lifestyle is temporarily affected because of the treatment frequency and intensity often involved with lymphedema management.  In the maintenance phase of lymphedema management, small modifications to daily routines may be necessary to include self-care activities; however, most individuals are able to maintain their usual lifestyle and activities. 

Will other medical conditions affect lymphedema treatment?
The presence of certain medical conditions can make someone an unlikely candidate for lymphedema treatment.  Generally these include, but are not limited to, acute infection, cardiac edema, renal dysfunction, acute deep vein thrombosis and some malignant diseases.  Conditions such as diabetes, liver disease, thyroid disorders, kidney disease, obesity, and some medication side effects may also limit optimal treatment outcomes.